Wheelchair-bound woman ‘not disabled enough’ for Centrelink

‘You can’t just look at a person and see how disabled they are’
- by
Eliza Murray

09 Aug
2017

A 23-year-old woman who suffers over 100 symptoms that leave her exhausted, unable to stand for long, and with over $1700 worth of medication and doctor visits a month still didn’t qualify for disability support through Centrelink because she ‘didn’t have enough evidence’.

Carmel Johnson has struggled her whole life to have her health taken seriously. Last year she was diagnosed with Ehlers-Danlos syndrome which causes problems with the connective tissues in her body.

She suffers gastrointestinal problems, can’t stand for long, and takes over 20 pills a day to help manage her condition, which occurs in 1 in 2500 people.

went for a walk with mum this morning ♿️she picked lemons off somebody's tree 🍋🙊they smell AMAZING 😋dad's fixing my chair in the background 😂🛠I had the best appointment with my gastroenterologist today 👨🏻‍⚕️he ordered a gastric emptying study on Friday 28th July 👍🏼and he asked if it's possible for me to eat something vegan 🌱but unfortunately I have to eat the egg 🍳 🐣😭I'm on the waiting list for an Endoscopy with a General Anaesthetic and saline before and after 🙌🏼💦(because sedation doesn't work on me I woke up and had a panic attack in my last endoscopy) 😱he looked me in the eye and said "I promise we will do a better job this time" 💜(even though it wasn't him last time) 😂he prescribed Nexium on top of continuing the Amitriptyline, Ranitidine and Maxalon 💊💊💊💊he examined my abdomen which was sore in a few places 😓he asked about all my symptoms and my weight loss and malabsorption and inability to introduce any FODMAPS 🤢he asked lots of questions about EDS and Dysautonomia 👏🏼and he mentioned Gastroparesis as an autonomic problem 🤔I asked lots of questions too and he answered them all 😊so in conclusion, this was the best doctors appointment of my life and I've seen A LOT of doctors 🤗☀️🌈🙌🏼🌻

‘I went through a period where I had a migraine about 25 days out of every month,’ Carmel toldnews.com.au.

‘I used a walker for my last semester that I was at uni and that was pretty difficult.

'I had trouble getting on the bus and people would stare at me all the time like ‘what is this young person doing with a grandma walker?’

Breakfast of champions! 💪🏼💊read on for answers to my chronic pain & everything else!!! 😱I had my long awaited Early Arthritis Clinic Appointment today 👩🏼‍⚕️and it was the best appointment of this entire journey! 🙌🏼first the physiotherapist took down my entire medical history 📝and then she did the Beighton Scale and a very thorough exam of my whole body & pain 👍🏼this took over two hours! 😱she said I'm very hypermobile especially in my neck 🤕👎🏼then she reported my medical history to the rheumatologist 👩🏻‍⚕️then the rheumatologist and the physiotherapist talked with me for another hour 💁🏻they concluded *drum roll plz* 🥁I have Ehlers Danlos Syndrome (Hypermobility type) ☠️and... I actually do have Fibromyalgia on top of that! 😰she explained that hEDS is a lifelong condition that I will need to manage in various ways... ♿️and she also said Fibromyalgia is just as debilitating and painful as arthritic conditions 🤒today is so important to me 🙌🏼because we may have just unlocked the answer to everything!! 👏🏼🔑EDS is linked to Dysautonomia/POTS 🤓My migraines are linked to EDS & POTS 🤕EDS and POTS are linked to Mast Cell Activation Disorder (which we also think I have) 🤒we think the MCAS caused my severe allergies and immune problems 🤔my low immunity caused me to experience many severe infections including Lyme, EBV, Chicken Pox that lead to Chronic Fatigue (ME/CFS) 😷EDS is also linked to IBS/GI issues 💩and my IBS was worsened by food poisonings in Vietnam 🇻🇳 we also strongly suspect I'm on the Autism Spectrum w/sensory processing disorder ✨and both can be linked to a lot of the above illnesses 🤔and lastly we throw in an Ovarian Cyst & Endometriosis just for fun! 😂So that's it mystery solved! 😱But I still need a diagnosis for MCAS & Autism 🤷🏻‍♀️to all my undiagnosed spoonie pals, never give up!! ✊🏼I've been having symptoms of these illnesses for my whole life really 😩and the last 3-4 years has been a crazy desperate search for answers 🕵🏻‍♀️and just as I was feeling like giving up 😭it all came together! 🤗Stay strong! 💪🏼 (p.s if you're not chronically ill and read all this & got no idea what I'm on about... thanks!! 😂but dw I will be explaining these things more soon) 💖😇

Unable to study, and unable to work, Carmel applied for disability assistance through Centrelink and was given a massive set of documents to fill out to apply.

‘It was a huge document that I had to write in that short amount of time. I was calling the specialists asking for letters to explain my disability and none of them could get it to me in those four days,’ she said.

Her claim was rejected and she was told by Centrelink that would need to get a job - something she hasn't been able to do since her illness took over her life.

Happy 5th Birthday to this little Vegemite 👯💕 * my little sister had her birthday party at the playground today 🎉she fell over on concrete and grazed her legs quite badly 😵so she wouldn't come over to sing and have cake 😱everyone was trying to help but she wouldn't come back 😥 (she has autism and difficulty with sensory processing) 💕I went over and asked her if she wanted a ride on my walker and she said yes! 👯👍🏼then we all sang happy birthday 🎶 it was a super cute sister bonding moment 💖I coped well at the party because we only stayed for about an hour 👍🏼and as you can see I had my walker and my crazy compression socks 😜♿️the weather today was perfect for my Dysautonomia 🌝👌🏼not too hot ☀️not too cold ❄️and my mum got me some vegan/gf/lowfodmap treats 🍪🍿

She’s hoping to make people aware that those receiving disability aren’t just trying to rort the system.

‘You can’t just look at a person and see how disabled they are,’ she says, adding that she has been told her problems are all in her head and she is ‘too young’ to have a disability pension.

got my new stomach medication today 💊💊hopefully the Maxalon & Ranitidine will settle things down enough so I don't have to get a tube 🤞🏼my Gastroenterologist received my urgent referral and luckily they had a cancellation so I'll be seeing him on Thursday 🙌🏼I also went to my EDS physio today 👨🏻‍⚕️he massaged my neck, back and pelvis 👍🏼and gave me some stretches to strengthen the muscles in those areas 💪🏼and in my legs because my knee has given out a couple of times causing me to fall down 😵😅I'm really happy today because new Game of Thrones is out! 👸🏼who else is as excited as I am!? 🤔😄no spoilers plz I'll be watching it tonight 🤗🔥❄️

Carmel’s struggles also come from her condition being quite rare. Jessica Adelman from The Ehlers-Danlos Society said:

‘While many with EDS certainly have severe enough symptoms to warrant welfare or disability status, it can be hard to obtain these services.

‘Those who evaluate these applications rarely have knowledge of or experience with the Ehlers-Danlos syndromes.’

It's freezing! ❄️I can't regulate my body temperature 🙃it's really hard to stay warm ☀️thanks to Dysautonomia 💓when I'm cold I shake uncontrollably 👻and I tend to hold a lot of tension without realising 😬this all makes my chronic pain even worse 🤒😰today I'm wearing a beanie, two dressing gowns, a jumper, a long sleeve top, warm pj pants, leggings, gloves and warm socks 😱now I just need something for my cold face 😂🤔I'm feeling really sluggish today 😴finding it hard to study but I'm doing the best I can 🤓I have a lot of pain in my back, head and neck 🤕muscles and bones ☠️💪🏼nerve pain in my hand from writing too much ✍🏼and my pelvic bone pain in the mornings is still getting worse 😩now it wakes me up and I can't go back to sleep because it's so bad 🤒😴😰and I'm still getting random intense flushes of nausea a few times a day 🤢it's exhausting 😴I still feel like a zombie 🙃but there's less than a week until I finish this semester 🎉and start treatment 😱so I'm just taking it one day at a time 👍🏼🍁💨

Far from wanting to mooch off of the system, Carmel has high hopes for her future if she could just get some support.

‘If I had the disability payment from Centrelink and I had the support that I need from the right doctors, I do believe that I could work up to a level where I could gain weight and then have more energy,’ says Carmel.

‘There is a lot that I think I could do and I am hopeful that I would be able to do one day.”

Since being interviewed Carmel says in an Instagram post that she was contacted by Centrelink for a 'service recovery'. She added that while this might be good news for her plans, she knows that she's not the only one fighting to get the support they deserve.

'I am not going to be quiet about this until they help everyone else as well! 💪🏼😊💙' the courageous woman says.